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NF Hero in the News: Tulsa World profiles Jerry Willman

The start of the month of February means one thing… Cupid’s Undie Run events taking place across the country! As participants continue shedding articles of clothing and raising money to support NF research, Tulsa World spoke with Jerry Willman about finding out he had neurofibromatosis, what it’s like living with NF and why he keeps running the same mile again and again.


Half-naked truth: Man with genetic disorder participates in Undie Runs to help others

There was a time when Jerry Willman, 50, wore long-sleeved shirts year-round. He didn’t want all the bumps on his arms to be seen by others.

The bumps are tumors.

The good news is his tumors are benign.

The bad news is more and more keep appearing.

Willman once counted 50 tumors on one of his hands, 60-some on another. That was years ago. He doesn’t count anymore — what would be the point? — but he said hundreds of tumors dot his body from head to toe.

“I think they are more visible to other people than to me because I just kind of blank them out,” he said.

Willman is long past the point of trying to camouflage his condition. He doesn’t exile himself to his home in rural Mayes County. He lives his life, and that’s why you may see him going shirt-less at the Rocklahoma music festival in May.

“I learned to accept it,” he said. “I can’t hide it. I might as well let people know about it.”

“It” is neurofibromatosis, a genetic disorder that causes tumors to form on nerve tissue.

Willman didn’t know he had “it” until two months shy of his 18th birthday. He intended to join the Navy after high school and was rejected because he was diagnosed with NF.

Though he wasn’t allowed in the service, he still wants to be of service, which is why he consented to be photographed and interviewed. He wants to raise awareness about NF and those who suffer from it.

“I have had people help me,” he said. “I might as well do what I can for others. I don’t like seeing the children go through stuff like this.”

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